Lewy body dementia, the second most common neurodegenerative dementia after Alzheimer's, is making headlines in the midst of the deaths of actor Robin Williams and radio personality Casey Kasem.
Lewy body dementia causes fluctuations in mental status that can lead to crippling anxiety, hallucinations, delusions, dizziness, trouble sleeping, and impairment of
motor functions, according to People magazine. In her first public remarks on the actor's suicide, Susan Williams said this week it was LBD that drove her husband to take his own life, not depression as was widely reported.
In the actor's case, the disease heightened his levels of anxiety, and caused delusions and impaired movement.
The progressive brain disorder occurs when Lewy bodies — abnormal deposits of a protein called alpha-synuclein — build up in areas of the brain that control behavior, cognition, and
movement, according to the Lewy Body Dementia Association website.
Dr. James Galvin, a professor of neurology and psychiatry at New York University Langone Medical Center, said one of the biggest challenges with the disease is that it is often misdiagnosed.
"Lewy body dementia is often misdiagnosed as Alzheimer's disease or Parkinson's disease, but is a unique condition," Galvin said on the LBD website. "In addition, LBD patients might be severely sensitive to certain psychiatric and other medications and can suffer potentially serious adverse reactions if they're given the drugs."
Casey Kasem, the iconic radio personality, died on June 15, 2014, and suffered from Lewy body dementia, his children
disclosed before his death, according to NBC News.
In Williams' case, his diagnosis for the dementia was confirmed when protein clumps associated with Lewy bodies were found on his brain during his autopsy.
"I've spent this last year trying to find out what killed Robin," Susan Williams told People magazine. "To understand what we were fighting, what we were in the trenches fighting and one of the doctors said, 'Robin was very aware that he was losing his mind and there was nothing he could do about it.'"
Despite its difficulty to diagnose, LBD is not a rare disorder.
"More than 1 million Americans, most of them older adults, are affected by its disabling changes in the ability to think and move,"
a National Institutes of Health pamphlet reported. "As researchers seek better ways to treat LBD — and ultimately to find a cure — people with LBD and their families struggle day to day to get an accurate diagnosis, find the best treatment, and manage at home."
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